What pain medication seem to work for others. I am about to start Humira soon, I hope. However, I am on Ultram and Hydrocodone for break through and the horrible night time back pain. I am Tired of taking pain medication. Was on MTX for 2 years, and it helped, but started causing oral ulcers and additional skin issues. I have severe psoriasis and scoliosis. Just wondering if I am alone?
Use of narcotics like codeine, oxycodone, and hydrocodone is generally discouraged because they have no effect on inflammation. Because of the long-term nature of PsA and the risk of dependence on pain medications is high. Dependence is NOT addiction, but because of the nature of these types of medications they generally require increased levels over time. This increase often leads to increased and difficult pain managenment because the bodies normal pain management systems become sluggish or damaged. The result of this sluggishness is actually more damage, more pain, and more inflammation. It is becoming increasing rare that Rheumy will prescribe these meds, most get pretty pissy if you get them from a PCP. At last note fewer than 1% of Rheumatologist patients are referred to "Pain Management" There are of course instances where pain meds are used, but its becoming rare. One notable exception is people with severe damage or damaged joints that cannot undergo joint replacement surgery may benefit from use of a long-acting narcotic under the supervision of a pain management specialist. These are usually Bone on Bone where long term inflammation has deteriorated soft tissues. Stand alone pain management clinics/docs are being shut down daily. This whole pain med thing is pretty much a US issue. Everybody else in the world never started or understands the extreme limitations
There are of course times when everybody needs a bit of help with a really acute situation. for me I have found nothing more effective than torodol.
I'm not taking any pain medication daily. I've been under the understanding that if my medication is working then the pain should go....I haven't experienced this yet, however I have seen a decrease in the amount of flares (which for me is when I have intolerable pain) and the daily pain levels are fairly manageable. Daily exercise (walking, stretching) helps along with Epsom salt baths and hot tubs :-)
If needed during an intolerable flare I've included Tylenol 3 to take the edge off and if that doesn't help with the pain levels then I see my doctor and sometimes a short course of prednisone to help. Hopefully you have great results with the Humira and less pain. Good luck :-)
Thank yall for the replies. I am certainly hoping the Humira makes a difference. I have some joint deformities in my hand, feet and spine and feel like this is causing alot of my pain. If I am moving, I hurt less, but if I sit for prolonged periods I am given reminders about my PsA!!
TaraLynn said:
I'm not taking any pain medication daily. I've been under the understanding that if my medication is working then the pain should go....I haven't experienced this yet, however I have seen a decrease in the amount of flares (which for me is when I have intolerable pain) and the daily pain levels are fairly manageable. Daily exercise (walking, stretching) helps along with Epsom salt baths and hot tubs :-)
If needed during an intolerable flare I've included Tylenol 3 to take the edge off and if that doesn't help with the pain levels then I see my doctor and sometimes a short course of prednisone to help. Hopefully you have great results with the Humira and less pain. Good luck :-)
I take vicodin 7.5 three times daily because two NSAIDS have given me anaphylaxis. In spite of this, my pain is not well controlled. For me, pain is the worst part of this disease. Before I had spine surgery, I went through a six week out patient pain therapy program which involved physical therapy, exercise, cognitive therapy, occupational therapy, biofeedback, feldenkrais, yoga, progressive relaxation and visualization. I am also a Certified Lamaze educator who has used psychoprophylaxis in my own natural childbirth and in helping many women give birth without medication.
All of this has served me well in managing my pain, but sometimes I really feel like I am going to loose it and just want to be free of it. There have been a few times that the pain has crossed over into the agony category and I find myself understanding why someone would call Dr. Kavorkian.
The only times I have ever been truly pain free from this disease is when I am on high doses of prednisone for a week or so. These "preddy parties" as I call them do wonders for my mental health. It is wonderful to feel like a normal person for a week, but these parties are rare and reserved for times like vacations or flares when I can't get out of bed.
I have been on three biologics so far, and none of them have helped my pain more than steroid injections and prednisone.
I am weaning off the daily prednisone and I am down to 2.5 mg per day.
I take Ultram slow release when I need to. It helps keep the pain at bay without that big spike in medicine which makes me feel a bit woozy-headed. Like Lamb said, long term use of those really strong meds isn't recommended but if you need something and NSAIDs don't work then a short term alternative might be in order. I have found that I can deal with the pain most of the time if I'm at home, but I can't afford to be in pain and unfocussed at work. And when the pain interrupts my sleep I now take a sleep-aid instead of a pain killer. Good luck, nami!
I just found this discussion. Hope you’re doing ok. I was wondering if most of your pain is in your back. I have mild scoliosis and osteoarthritis in my spine, and that causes me more pain than the PsA. I take Ultram and occasionally Percocet. I think the key to using pain meds, for me, has been to back off them when I can in order to keep them useful. Otherwise, I have to keep increasing the doses, and they become less and less helpful. Some days I don’t work, I try to take it easy and cut back on the pain meds. I still walk for exercise, and stretch, but otherwise modify my activity level so I’m not getting depressed from the pain! You will find that some people have strong opinions about not taking pain meds. They have their own personal reasons. But there are many people who realize they have to take pain meds to be able to have a good quality of life. Don’t let what works for you be trashed by other people; not everyone knows how to be respectful of others. I’ve had this disease for 15 years, and did a stint on Humira. How is it working out for you?
Thank you for your reply. The majority of my pain is in my lower back. The pain for me is worse at night. I too only take my meds when absolutely necessary to keep them effective and to prevent addiction. However, when I need them, I can not function without them. I appreciate your reply and I think each person deals with and feels pain differently.
I think you will find most physicians at this point are taking their patients off of all opoids. There are many reasons for this. The one exception is going to be for acute pain (6-8 weeks at the most) and in chronic care cancer patients in end stages. As a result all pts with chronic pain are being re-assessed; this includes PsA pts as well as lots of others. Most Rheumies are using NASID, DMARDS and Biologics. If pt's disease is not well controlled then meds will be adjusted. If the pain is from disease damage then surgery, PT and OT will be used. Any one whose treatment plan reflects all the above and is still having pain will be referred to pain management where the meds used are not narcotic but Gabapentin, Lyrica and other non narcotic meds. This is being implemented across the USA as we seem to be unique in our country and our present out of control narcotic problems.
While PsA can be painful it should not be chronically extremely painful. That is why PT and OT are used once the disease is under control. I have had it since birth and only diagnosed in my 50s. Mine is spondylitis type and my spine is pretty destroyed with scholiosis, kyphosis and lordosis. I have multiple herniations in all four areas C-T-L-S and even my tail bone is twisted. Most of my herniations entail some sort of spinal nerve involvement. I do not take pain medication daily though I do use it between biologics. I am on my sixth biologic Stelara which I take with mtx every week. I take Celebrex and Tylenol twice a day and a muscle relaxant when I can't lie down at night.
I have not had any surgery yet but do get injections when my fingers lock. The only surgery they can offer me is a full spinal fusion. I am not interested in this as I would have way less mobility than I do now. I can make my whole body go numb when I turn my head just so but I am not in any danger of transecting my spine so I let it be. If I have a change in bladder or bowel or can no longer move my legs I will have the surgery but until then I have way too much to do!
No one is trying to tell you that you are bad or weak for taking narcotics. But you need to be aware those days are coming to an end whither pts or Docs like it. And narcotics used now are not in your best interest. If use them now they will not work and you will not be able to get them later when you do need them.
I feel that I do need them now, as I have taken all other NSAIDS without any relief. It is either take them on bad days and function or lie in bed in misery without them. I do understand the deal with narcotics as I was married to an addict. However, the addicts are the ones that hurt those of us who absolutely need something to help with pain. I have passed 8 kidney stones (5 without Taking any narcotics) and can deal with them better than this arthritic pain.
You may wan to discuss this with your Rheumy then. If you are on Humiria, a NASID and a DMARD and still having this much pain it may be time to see a Spine specialist to see if you are a surgical candidate. NASID like Celebrex or Naprosyn may seem to you to not be working but it does help to reduce inflammation and thus pain. I take Celebres and Tylenol every day. It works long term to reduce pain.
Mtx frequently causes mouth sores so folic acid is taken daily to prevent that side effect. Your Rheumy can prescribe another DMARD if you are still getting mouth sores despite the folic acid.
Your Rheumy should be working hard to reduce your inflammation and thus pain before prescribing narcotics. Are you doing PT? That also really helps to reduce pain.
Actually addicts are not the problem, they do a very good job of handling the narcos and rarely fataly overdose. Street drugs with unknown quality are the issue for addicts. Part of that is they are highly opiate tolerant. They have never bee the focus of any discussion I have been involved in. When I went through pain rehab many years ago, I didn't meet a single addict in fact.
It is the dependent that are in constant cycles of pain/need cycles frequently die, but worse become increasingly difficult to treat. As little as 10 days of use can start the pain dependent management cycle. It can be managed but it is difficult and not in the purvey of the average physician. These poor folks are rarely out of pain. There is nothing one can do to explain that when the pain can not be tied directly to response to a physical insult, then it is an insult to the pain management centers (a part of the immune system) and further insult does not help. When the pain becomes severe enough and analgesia is insufficient, they either seek help or die. The number dying rather than doing the hard work is why the narcos are going away. Many can handle it, until they can't, what they do is their choice. We can only hope its an informed choice. Sadly docs and nurses make the worse choices (for themselves)
My GP prescribes low dose opioids for me and they do help some, but I still have pretty significant pain. If I take any kind of NSAID, I have anaphylaxis and that is such a drag.....I use the opioids as directed and have never abused them. I have weaned myself off of them at least four times in my life.
I am in limbo, prednisone purgatory, while I and my rheumatologist's office manager fights an insurance appeal for off lable treatment with simponi aria. Once my symptoms are somewhat eased I have no reason to think that I could get off the opioids and prednisone. That is my hope !
I don’t know what the big deal is with an occasional pain pill. They are tougher to get but, not impossible. My pain specialist gave me a bottle of oxycodone 5 mg to use a bedtime if needed. It’s not something I could see using during the day.
Due to medical reasons, I can no longer take daily doses of NSAIDs and steroids isn’t an option due chronic yeast infections. DMARDs don’t do anything for pain for me (Methotrexate, Plaquenil, and Sulfasalazine). I’m sure I’m not the only one in this boat. I use feel like a bad person for taking an occasional pain pill, but anymore.
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